Faith had another MRI today (with and without contrast), as well as an MRV. These were ordered for the severe post-infusion headaches she’s having as they want to rule out a blockage in the blood vessels in her brain. Her headache pain is currently rated at a 6 on a 1-10 scale.

Her Immunoglobulin levels have dropped too low again; we’ll be at the hospital all week for another high dose IVIG infusion (# 11), running over 4 days this time, in hopes of decreasing the side effects.

She continues to struggle with the P.A.N.D.A.S. symptoms, most challenging the last couple years are the anxiety, emotional lability (strikes out of the blue) and obsessive bad thoughts, although there are many others. We hope this will dissipate as she heals (it takes up to two years with each exacerbation – this is # 3), as they have in the past.

She’s never had a full two years to heal as she has so many strep throat infections, that she winds up back at square one each fall/winter for the last three years every time she gets another one. Thus, she’s pulling out of this one more slowly than previously; however, we trust in God’s divine healing power.

Did I mention that we went Gluten Free in November… a week before Thanksgiving? Ha! It’s actually going quite well and we’ve had a lot of fun trying new things! I absolutely believe this alone has had a very positive impact, not only on the PANDAS, but on the migraines as well. Most PANDAS children struggle with rage, thrashing (severe tics… looks like a seizure, but if you’re familiar with those, the movements are different), unconscious episodes that can last up to several hours (and they do not remember afterward… a blessing as our kids are so guilt ridden). While Faith never had tantrums as a child; she has a severe case of PANDAS and experienced these episodes during her first two exacerbations… however, those have been completely absent this past year!! Praise the Lord for this blessing!!

Also, a young person dear to my heart has just been diagnosed with cancer and has started aggressive treatment for it.

I’ve been feeling the strain myself recently of too many medical challenges (and drama) in recent years, overwhelmed and tired. I’m sure I’ll be fine with God’s help, but I do need to make some changes to take better care of my own needs on a regular basis. I don’t tend to excel in that area.

People sometimes ask me how they can help in our journey with PANDAS. Please read this and take a few minutes to write your representatives on behalf of children who desperately need medical care for these autoimmune conditions. Thank you!

Do you have a child or know a family who has been impacted by PANS: PANDAS-PITAND?

I encourage everyone to contact their state representatives in support of similar legislation! This will only take a few minutes of your time and will do so much to help a child whose life has been turned upside down.

See this link: http://www.usa.gov/Contact/Elected.shtml to contact your representatives! It’s imperative to share with them the devastating impact this has on children and their families and the urgent need for additional research, as well as ICD listing and insurance coverage!

Please, be clear that high dosage IVIG *has* been shown to be helpful for these autoimmune conditions and should be covered by insurance for all PANDAS-PITAND (PANS) children. Each treatment costs $ 10,000 – $ 12,000 and many children (such as Faith) require ongoing infusions. Often, they are not covered by insurance.

Also, direct them to our website: PANDAS-PITAND Awareness & Research Supportfor additional information. Review the list of symptoms on our home page. Imagine your previously normal child suddenly becoming gripped by most, if not all of these symptoms at extreme levels of intensity. These children know there is something very wrong with their brains… they live with sudden onset

phobias,

obsessions,

contamination fears,

anxieties,

separation fears,

school refusal (yes, even children who loved school and were in gifted classes),

emotional lability, including rages (even in children who previously did not have temper tantrums)

ADHD

Major Depression

Relentless unwanted “bad thoughts” (this can range from thoughts of harming others to thoughts of suicide)

compulsions

memory loss

inability to trust your own brain and body that are suddenly turning on you in dramatic ways

The lives of your family change, literally overnight and are never the same… unless you can get this monstrous auto-immune disease into remission.

I co-admin a group of hundreds of PANS: PANDAS-PITAND parents, that grows daily. These families are in crisis, desperate to find help for their seriously ill child(ren). There are only a handful of physicians in this country who are currently experienced in treating these conditions. If you have any questions about these conditions, please message me through this blog or our website: PANDAS-PITAND Awareness & Research Support Contact page

Our children can’t wait. They need help NOW! Thank you for helping a child… please share this post.

Faith was probably about 80-85% in remission at the end of the summer as school began. This was such a huge improvement over where she was last winter – so very ill and we were very concerned.

She started back to school with a late start and modified schedule. I noticed a renewed confidence in her that I’d not seen in longer than I could remember – years. Grades were excellent, she looked much healthier. While I knew she still had a long way to go (her PANDAS specialist estimates two years for her brain to completely heal), I was starting to feel oh, so relieved!

On October 14, she was diagnosed with another strep infection. She had 2 weeks of antibiotics and it seems to have cleared. However, she started having severe migraines that we could not break with medications and wound up hospitalized twice – once in October and again in early November. They remained severe and she missed a great deal of school and fell behind in classes again.

Autumn 2011 hospitalization for severe migraines

We learned of a family member who has Celiac Disease and since removing gluten, has noted dramatic improvement in migraines. Although she tested – for CD, on the advice of her Neuro-Immunologist, we decided on a 3 month trial of a gluten free diet for her – I’m doing the same as my migraines are also severe and frequent. Additionally, many PANDAS kids are gluten free as it seems to help with autoimmune diseases.

At about three weeks into the GF diet, the migraines finally calmed – praise the Lord! She does still get them occasionally, but with the exception of one of them (2-3 days pre-MRI – she was very nervous about the MRI and it calmed afterward), they are responding to first line medication now. We’ve been doing this for about 2 months and it certainly does seem to be helping. We’ve had several storms now in which we’ve walked out of the house and been surprised to learn it is raining – this is huge for us as we are so triggered by weather that we are more reliable than the weatherman at predicting rain within 1-2 days. At least, we were before going GF.

Faith missed almost all social activities during the autumn as her health declined. She signed up for Junior Cotillion this winter and we hope she’ll be able to attend all 6 events – it would be so good for her to have some fun in her life. I was able to snap a rare photo of her as she headed to her first one when she looked the healthiest she has in a very long time.

Junior Cotillion - Hollywood Night

Lovely, yes? 🙂 Unfortunately, this was a rare moment and she’s exhibited a rather steady decline in recent weeks. While an episodic course is to be expected with PANDAS, she’s taken a more negative trajectory in the last several weeks and I’d estimate she’s about 65% healed at this point – wrong direction.

We’re working with our Ped and we see her specialist this week… please keep praying for wisdom for all of us and clear treatment solutions that will get her back on track to 100% remission. Thanks so much for your prayerful support; it means more than we can articulate!